Update on Sebastian......11/26/2013

Dana here. We had a Chicago trip for chemo yesterday, which went smoothly. In and out pretty quick. Bastian has been feeling better. He's been fighting a cold off and on for the past couple weeks, but it looks like it's finally going away. Pain is managed, no more random bleeding. He's been getting really tired though, going to bed around 7 or so each night. This cycle is almost done, and we will be doing a set of scans the first week of December to see if any progress has been made with these meds. Until then, we are getting ready for Thanksgiving with family and friends.

Unspoken prayer posted 9/19/2013......11/26/2013

UPDATE on unspoken prayer posted 9/19/2013. Throat cancer was the diagnosis, he has already had one surgery using some muscle from his chest to reconstruct part of it. He has another surgery coming to rebuild more and work on his voice box. Please keep him in your prayers, may everything go as planned. I thank you from the bottom of my heart for the prayers lifting this man up to our Heavenly Father. God likes to work when nothing else will. May He bless everyone of you.

Blessings, Deb

UPDATE:
 Buddy went to the doctor yesterday, got his bolts, screws, and stitches out and was told to go eat! He has had some ice cream and some macaroni and cheese!

Praise God
Blessings, Deb 

UPDATE:
     Buddy's rebuilt throat has healed and he is doing well. He is able to eat by mouth and is gaining weight.

All Praises be to God
Blessings, Deb

Prayer Request for Ed Reed......11/26/2013

Please add Ed Reed to your prayer lists. He is scheduled to have Gallbladder Surgery on December 5th. Keep him in your prayers for an uncomplicated surgery and a fast recovery. God bless you and yours, Thank you very much for your prayers.

Blessings, Deb

Ed's surgery went well with no complications. I was thrilled when the surgeon came in and talked with us then said "My I say a prayer with you?" I loved him for giving God all the credit for a good outcome. 
Thank you for all the prayers, we never get too many prayers. God bless all of you Prayer Warriors.
Blessings, Deb 


UPDATE:
Ed is continuing to do well after his Gallbladder Surgery. 

God bless all Prayer Warriors. Praise His Holy name.

Blessings, Deb  

Prayer Request for Butch Bowers....11/10/2013

Linda Bowers

Dear friends, May I please ask each of you to lift my husband Butch in prayer. We have learned he has cancer, more testing to be done, to find out where the location is...as of now we do know that it is in the lymph nodes in his neck!! Thank you all so much for your love and prayers.

Linda is a good friend of mine. We appreciate all prayers.

Blessings, Deb 

UPDATE:
Butch has had one surgery on his throat. He has another coming up where they are going to graft skin from his chest to reconstruct the Voice Box. Please continue praying. Amen
Blessings, Deb

Prayer Request for Teri's daughter...10/12/2013

PLEASE prayer for my daughter. She has a beautiful heart but between a very sorry husband (hates God and does not believe in Him) and the drugs he has her on she is wasting away. Before he came along she believed in God and didn't have all the tattoos he's put all over her and she loved everybody, now she drinks, and she is hurting her daughter and her grandson, really the whole family. Please prayer for her.

Thank you
Blessings, Deb

Prayer request for Linda Smith's family....9/28/2013

My friend, Linda Smith, lost her Sister this morning. Please keep her family in your prayers. God bless you
Blessings, Deb

Unspoken Prayer for a Family.....9/19/2013

I have an "Unspoken" prayer that involves several members of a family. Please pray that God will give Comfort, Strength, Understanding and Energy. May God also bless the ones giving care as it takes its toll on them as well. Thank you for your prayers, they are greatly appreciated.
Blessings, Deb

Update on Sebastian.....9/13.2013

Hope for Sebastian

Dana here. We got back home in time for dinner last night. Bastian is off at school today, just a little bit sore from his bone marrow biopsy. Three days of scans and tests, that FINALLY gave us good news. His MIBG scan showed decreased bony lesions, and his CT scan shows his disease to be stable, with no new findings. It's been a really long time since we got positive news other than everything is stable. This is the first time Bastian has been responsive to a drug treatment. We are optimistic!

Childhood Cancer Awareness Month is September

Dana here. September is Childhood Cancer Awareness Month. I wear gold for Sebastian everyday, and I will wear it everyday for the rest of my life. No child fights this fight alone. 

Update on Sebastian....8/17/2013

 Well, we had a long 2 days in Chicago. On Wednesday, we started cycle 2, and a new drug was added. We had some delay at his appointment, because they couldn't start the meds until his labs came back, so the boys watched a couple movies to pass the time. They saw that his thrush is still here, and not getting better than it was last week, so they called in a new med to Walgreens. On our way home Walgreens called to say the prescription was on hold, and I was so tired by then, that I didn't bother with it that night. Yesterday, he got the same 2 drugs from the 1st cycle. Both boys have got colds, and the doc noticed some decreased lung function in Bastian, so it's back on his albuterol inhaler. I brought up the meds being on hold at Walgreens, and they called to straighten it out, assuring us it would be ready for me when I got home. When we got back to town, no meds... they don't have it in stock, and none of the other pharmacies in town do either. Very frustrating. They are trying to rush some in for the weekend, and in the mean time, he'll just keep taking the magic mouthwash. He's been very tired these past couple weeks, and I think it's that the chemo is finally catching up to him. School starts on Wednesday, and he's gonna have to miss the first day for a clinic visit. It's been a long, tiring week.
Mom Dana

Prayer request for Mrs. Hensley--8/8/2013

I am at Redmond Regional and they have mama in ICU. They did a CT scan last night of her lungs and the doctor told my sister and I this morning that her lungs are worse today and it doesn't look good. Too much CO2 in her blood, and she has MRSA in her blood, surgery is out of the question, the doctors say she probably would not wake up or be able to come off the ventilator. Please pray for mama and my family.
Pastor Terry Hensley 

Mrs. Hensley has moved to her new home in Heaven. Please remember her family as they go this last journey with her. God bless all

Update on Sebastian....7/30/2013

 Bastian is doing pretty good with the new drugs so far, no real bad side effects. He's a bit more tired than usual, and his left hip has been hurting pretty regular, but it's all manageable. His left side has more disease than the right, it's the side his cancer originated on, but the methadone is doing it's job. He doesn't need to take the extra painkillers very often, which is good cause they make him real emotional. He's doing much better about taking his meds when he's supposed to, which is also good, cause I hate having to ground him. We are hoping to possibly take a family trip to Six Flags in St. Louis before school starts, and while Bastian is still up for it. Trying to do all the things we can, while we can, you know?

Update on Sebastian....7/18/2013

Dana here. Yesterday went well. He got the first dose of the new chemo, as well as a second drug that they hope will "trap" the lesions in his bones from being able to spread. He will be taking a daily oral chemo for the next 28 days, along with calcium and vitamin D to keep his bone density up. We went over the scans from last week, and everything looks stable. Innumerable lesions and tumors throughout his skeletal system, the worst being his spine and legs, 4 micro-nodules in his lungs, and the tumor in the left adrenal bed. The doctors explained that they found neuroblastoma cells in his bone marrow, but they are mature cells, which don't spread as fast as young cells. So, even though I wasn't happy that they found it in his marrow, I'm glad everything is stable. The new chemo drug is supposed to slow the blood flow to the tumor sites, slowing the growth and hopefully causing some of the smaller ones to die off. We'll be going up next Wednesday, and every Wednesday for the next few months, to keep an eye on his blood counts and for check ups.

Update on Sebastian....7/7/2013

Hope for Sebastian

Dana here. Tuesday we head to Chicago for 2 days of tests and procedures to make sure Bastian is eligible for the new drug study. He'll have his 12th double bone marrow biopsy... I'm concerned about what the scans will show, especially since we haven't been doing anything but treating his pain for the past 3 months. But we'll come to that when we get there...

Prayer request for Teri Bostick Cox...6/30/2013

Please add Teri Bostick Cox to your prayer lists. She had a Triple By-Pass in May and is still having a lot of trouble breathing. May God move in a mighty way upon her in the Precious name of Jesus. Amen

Blessings, Deb

Update on Sebastian....6/24/2013

Dana here. Well, Bastian wanted a mohawk, so now he has one. Maddux does too, I'll post pics of them together when he gets home.

Update on Sebastian.....6/19/2013

 Bastian has been feeling great lately. So good, that his docs and I have decided to hold off on starting the new study until mid-July. I'm not really keen on the side effects that the drugs are going to cause, so the longer we can wait to start, the better. For now, Bastian is going to be able to enjoy more of his summer. 

Update on Sebastian....5/30/2013

 Just wanting to say thank you to everyone for their constant support of our family. Even if we don't respond right away, we read every post and every comment on the page. There are several of you who post well wishes everyday, and we are so humbled by your love. Bastian is feeling pretty good these past couple weeks, and we are enjoying the time until the next drug trial starts later next month. School is out next week, and we are looking forward to a bit of fun for the beginning of his summer before all the trips to Chicago start back up. So, again, thank you! Dana (Mother)
If any of you would like to post well wishes, go to Hope for Sebastian (Community) and leave the Family a message. Thank you and God bless you.
Blessings, Deb

Last Update on Angel Bella...5/30/2013

With sad heart, I want to let you know that sweet Bella has gained her wings and gone home to Heaven. Her Funeral is today, I've copied her arrangements below. Please pray for God's strength for her Family.

Funeral Arrangements for Bella Rodriguez-Torres 
Viewing on Thurs 5/30 Time 5-11pm @
Caballero Rivero Woodlawn Funeral Home
Kendall, 
11655 SW 117 Ave.
Miami Fl. 33186
Celebration of Bella's Life Mass of Resurrection is on Friday 5/31 @ 1pm at St John Neumann Catholic Church 
12125 SW 107 Ave
Miami, Fl 33176
Burial to Follow the Mass
In lieu of flowers please consider making a small donation towww.Bella2013.com
Bella's Partner Sgt. Javi Ortiz and her fellow Officers have organized a Fund Raiser for St Baldrick's to help find a cure for Childhood Cancer. PLEASE WEAR RED!
Blessings, Deb

Update on Sebastian....5/22/2013

Dana here (Mom)- We made it home. We'll be starting the new clinical trial late next month so I have a chance to recover from a second carpal tunnel surgery I am having next Thursday. The docs say Bastian looks great right now, so continuing this medicine break is OK with them. This past Saturday, Bastian went with our friend Blake McCormick to the time trials for the Indy 500. Bastian got to go down into the pits, and he got autographs from 15 of the racers! He had an awesome time!

Update on Pray for Bella....5/20/2013

Bella had a very good day. She spent about 4 hours in the recliner which I am sure felt good to be in a different position than in the hospital bed. Then this evening she said she wanted to take a bubble bath. Ummm, ok. She has a foley catheter, her port, 2 peritoneal drains and her nephrostomy bag that can’t get wet. But you know us, we love a challenge  Where there’s a will there’s a way and since bubble baths are on her LIVE LIKE BELLA list it had to be done. I removed the foley (put in a new one after), clamped, taped and covered drains, hooked up the portable oxygen and carried her to a nice, hot bubble bath. It took 4 of us but we made it happen. She was SO happy. She sat in the bath for almost 30 min with her eyes closed just savoring it. She has not had a real bath or shower in a month. It must’ve felt so good. I am just so thrilled that she is asking to move now. We are always trying to get her to move but she never wants to. I am hoping this means she is feeling a bit better, she looks good thank God. Please continue to pray for her miracle! I also want to thank everyone for your support and prayers. The pictures of the cars, people wearing red, the emails and texts and the purchasing of the Live Like Bella items. It ALL means so much to us. To see how Bella has touched so many in her short life is humbling, heartwarming and makes us so proud. I can only dream of being as special as her. God bless you all! #LIVELIKEBELLA

Today's Update on Bella...5/17/2013

Bella had a great night. I managed to move the couch right next to her and we slept the whole night holding hands  She is doing well and resting. She has Drina praying the Rosary now and our dear friend Father John is coming to do Mass at our home now. Her blood test this morning shows her kidneys are improving and we don’t know what to make of that but we will take it! Keep praying for her miracle! God bless #LIVELIKEBELLA

Update on Bella....5/14/2013

With the help of many, many amazing people we were able to take Bella to Disney. All she has wanted to do was to go on Its a Small World. She has been sleeping most of the days but whenever she wakes up she asks to go. I had a crazy idea to see if we could take her on the ride one last time. So within 24 hours we had a huge van, portable oxygen, a nurse and friends waiting for us at Disney to escort us in. It was probably the quickest Disney visit ever. She slept the whole way up and the whole time thru the park. The minute we were on the ride she opened her eyes and stayed awake the entire time until the ride was over. We are now on our way back home. It was a short but very meaningful and unforgettable visit. There are NO words to express our thanks to all who helped make this happen. There were a LOT of logistics to make this happen safely and we r forever thankful and extremely grateful. God bless u all. #LIVELIKEBELLA

Update on Sebastian....5/14/2013

 Haven't posted much lately, but we've been busy at home. We had a great mother's day weekend. Cooked out, made tie-dyed shirts, watched movies,took naps. It was great. Bastian has been feeling pretty good, his pain is MUCH better, and he made it to school this morning, and a couple days last week. I talked with his doctor last week, and we are looking to start a new drug trial next month. We'll be driving up to Chicago every week again for a while, which sucks, but at least we still have some things we can try to keep his cancer under control. But for the next couple weeks, we are just going to take a break at home.
Blessings, Deb via Sebastian's Mom Dana

Update on Sebastian.....5/8/2013

 Bastian has 3 more radiation treatments to go. His pain is so much better. I talked with his doc in Chicago via email yesterday about what's next. They tested his tumor sample to check for mutations that are known to respond in certain drug trials. And although the one they were hoping for was not there, there are a few mutations present that have drugs that have been known to help. So, we are putting together a list of trials and side effects, and we will weigh out the pros and cons of each. For the moment, we are taking a small break from any drugs while we plan our next battle. He's been feeling really good lately, playing outside, not much pain, only little bits of nausea. It's been nice to have an active, not-hurting Bastian in the house.

Dana, Sebastian's Mother

Update on Bella @ Pray for Bella....5/8/2013

Dear Bella's Believers:

It is with peaceful yet heavy hearts that these lines are written. 

Yesterday, together with our family and in union with Bella's doctors, we decided to bring Bella home under hospice care. 

For the last several days we have noticed that Bella's organs have begun failing. Her kidney and lung functions are greatly affected. Her blood counts are telling us that they can no longer function to keep her alive much longer. Her bone marrow is exhausted.

Additionally, much to our disappointment, the latest ultrasound of Bella's lungs shows new disease on the lining. 

Soon Bella will be an Angel, please continue to pray for Bella and the family as we step into the next and final part of this journey.

Thank you all for your prayers and best wishes, they are greatly appreciated.

Update: @ Hope for Sebastian....5/1/2013

 Well, we have a week's worth of radiation treatments under our belts, and already Bastian's pain is getting MUCH more manageable. He is currently running around my work, playing hide-and-seek with Maddux (who had a doc appt this morning, and got to hang with us all day). He's got some noticeable fatigue, so they are going to be checking his blood counts to make sure he doesn't need a transfusion. All in all, things are well with him right now. The weather is nice lately, and he's been getting outside for air and playtime with Maddux, as well as hanging with Gabbi while she cleans up her first car. :)

Update on Sebastian....4/26/2013

 In the waiting room at Carle cancer center. This is Bastian's 3rd day of radiation. So far, so good. No side effects yet. His pain is still the same, but the doc told us yesterday that it would be about a week before they would expect any change. He is sleepy, all the time, from his pain meds, but they are working.